Winston Spence was diagnosed with Parkinson’s disease in 2014. With wife Kathy, he continued to travel during the early years, but his condition has worsened over time with falls becoming more frequent. Read parts one, two and three or continue on to read the final part, including how Kathy is handling the challenges.
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Where to from here?
I guess I must remain positive that they find a cure for Parkinson’s.
There is always something new they are trialling with drugs or other things.
My neurologist in Brisbane, who does my eyes, is one of the best for brain stimulation, which is the reason I went to him in the first place.
He was concerned about what type of Parkinson’s I had and about Lewy bodies. This is quite bad, where you can develop dementia. He sent me to have a PET scan, which came back all clear.
I’m not a candidate yet for a brain stimulation operation. Apparently, they have great success with people who have the shakes and balance problems. But because of my speech issue, he is reluctant to do anything, as it can make my speech worse. So, at present it’s on the backburner, which suits me, as I don’t fancy anybody drilling into my brain – never know what they might find.
Apparently, they fit a device under the skin in your chest with wires going up into the brain. You are controlled by a remote. Bloody hell! If Kathy got hold of that remote, she may have me doing the dishes and housework! Every wife’s dream is a remote-controlled hubby isn’t it?
I am happy with my life at 69, and if there is somewhere to travel to, I’m good. Hopefully when all the COVID issues are over we can see our kids and grandkids again. It has been about eight months since we saw them last – bloody borders.
Kathy’s perspective
When Winston first came home from the doctors and said they thought he had Parkinson’s disease, I thought, ‘Oh no, not that.’ Knowing the kind of man he is, I wondered how he would cope. Always doing stuff – gotta go, gets bored easily, makes all the important decisions, knows how to fix everything and solve all our problems. He is our family rock. The best husband and father we could wish for. After his diagnosis, we did the scary part where we read Dr Google. We don’t do that anymore unless I want to know the next stage of where Winston is at.
After tests and a proper diagnosis done, I thought, well it is what it is, and we must make the most of it. Don’t look too far ahead as it might never happen, so we take one day at a time. The one thing I said to him was I reckon I could handle whatever happens to him if he doesn’t get grumpy. No point in feeling sorry for yourself. And he doesn’t. He gets down a bit sometimes, and I can’t say I blame him. He also gets anxious at times, but luckily he can talk about it when he feels that way.
At first, he could do everything as he normally did. He loves to travel, likes to have something to look forward to, so he was still able to plan and organise our holidays. He still does, but COVID-19 is in the way right now. He still fixes things but just takes longer, struggling to get his fingers to work sometimes. He doesn’t feel like doing much some days, but that’s cool, we just hang out.
His speech gets to him and he struggles talking to people sometimes, but that’s cool too. We just hang out some more. His mind is still good. We still have a good laugh. He hasn’t lost his sense of humour. He’s a funny man and makes me smile. We even laugh when he falls over sometimes, while we are trying to work out how we are going to get him up. Or when he is talking to me and I get it all wrong (which is often). He must get sick of having to repeat himself so much.
I feel sad sometimes when he gets frustrated at trying to do simple things and can’t, as he’s always been so capable of anything and it’s like his ability is slowly being stripped away. I feel sad when he gets upset after he falls sometimes. He tries so hard not to fall but I can’t stop him. I feel sad when he gets so damn tired, he almost feels depressed and I don’t know how to mend it. He goes to bed early and usually wakes up feeling so much better.
Over the past two years I have noticed many changes. We try to deal with each hurdle that comes his way. I don’t dwell on the future too much, although I have a rough idea what is ahead. I find it a bit overwhelming if I read too much. I just want to deal with what is happening today and keep doing things together.
I love him dearly and want whatever is best for him. Every day is different. I don’t know how he is going to feel till he wakes up in the morning, so we plan our day once we know that. He has always been full of surprises, so nothing has changed.
What will be, will be. If the sun goes down at night and rises again in the morning, we will keep on plodding away. I know it is hard for Winston with the constant struggle to keep up or keep on doing things. But it is important to keep positive, to keep on smiling and to be as happy as we can.
We have a loving, caring family, and lots of caring friends, so we have a lot to be thankful for. We want to be strong for each other and love each other, which helps us get through the hurdles we must cross.
Love you darling and look forward to a long life together. Maybe different to what we planned, but we still have each other.
Do you know someone affected by Parkinson’s? Has their journey been similar to Winston’s or very different?
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